Kayanne

He is doctor who has a website, and he interviews other doctors and specialists about health issues...I think it is mainly pediatric. He also puts a lot of clips up on youtube. www.drmdk.com He is not a PANDAS doc, but he was very nice in the fall, when some of us left comments on one of his old youtube clips with a neurologist that was taking a negative stance on PANDAS...then he interviewed Dr. Schulman, and put up a whole PANDAS page on his site.

Penicillins: Penicillin (pen vk) and injectible Pen (Pen G or benzathine), Amoxicillin, Augmentin Cephalosporins: Kefelx, Omnicef, Duricef and many others Macrolides: Erythromycin, Zithromax, Biaxin -- possibly clindamycin (some sources class this a a macrolide others call it a lincomycin antibiotic -- I've never gotten full clarification) This is not an extensive list at all...I just listed the common ones that are mentioned on this forum.

She is great to listen to. All of the video clips can be found at: http://www.drmdk.com/html/pandas.html Dr. MDK has been really great about setting up an informative PANDAS page. He even posted Dr. Schulman's zithromax protocol on that page. He also posted them on his youtube account. I always try to make it a point to thank doctors who try to get the word out. I am pretty sure, however, that Dr. Schulman's pediatric practice is limited to her community.

No, not all of our children have this in common. MY daughter passed the 7. She did have all of her prevnar shots. We have not seen any adverse effects from vaccines in our house.

Yes, but when I read that, there wasn't really anything new in the numbers. Nowhere does anyone say that below 160 is not PANDAS. There just seems to be a Lower, Middle, and High PANDAS Range. And If you look at the chart on page 3 figure 2.2b of the JNI article by Dr. Cunningham, then you will see even normal sera tested as high as the 130 range. I think the Cam K score needs to be used as a piece of the puzzle at this point because it is still being studied as to what it may really mean.

Has a doctor told you it must be above 160 to be considered PANDAS? Sorry, I don't quite understand, can you please clarify? Thanks.

I am truly sorry for your loss. Thoughts and prayers...

We had the talk this summer with my 9 year old. She was getting exposed to some wrong ideas on the playground, and started to ask questions. Also, she is going to hit puberty early...so we found some online NOVA show to explain the basics. She was a bit freaked out, and I just told her that when you are older, and in love, it is really wonderful, and it leads to the blessings of children. She seemed to accept that for now. I would venture to say, your son probably knows the basics already. You may be looking for something along the lines of the consequences of his actions. I have heard of a book called What's Love Got to Do With IT?, but I cannot say for sure if it is a good resource. I always liked the title. I don't know how much OCD/anxiety your boys have suffered through (if any), but I know my husband has suffered horrible guilt (and me too to some extent because of our religious upbringing) over things that are natural. I think his anxiety and OCD tendencies have made this type of thing worse for him. So, I just wanted to point that out.

Call the doctor's office to confirm the procedure. Was the scheduler sure it was JUST the tonsils? Best of Luck...I hope it helps, and keeps the strep exposure down...

I didn't realize that Dr. Latimer was not taking new patients. Did you call her office recently?

Yes. My daughter was thriving in kindergarten, but for the 4th quarter, she couldn't be "assessed". That is what they put on her final report card. With prednisone and antibiotics, she was fine by the beginning of first grade. So, the only thing I can give you is my experience that getting her PANDAS treated resolved any cognitive difficulties.

Cephalosporins are also an option. Keflex and Omnicef would be in that class of antibiotics.

We have never had a problem buying it. Mostly, we get it at the Vitamin Shoppe, or I've ordered from i-herb. And, yes there is a addition on that book I mentioned that discusses the controversy--but that ban has been lifted. I believe it is true that they didn't want it competing with prozac. I know your daughter took prozac in the past (I'm sorry I don't know what her current status with that is)--you probably already know this--do not mix an SSRI and a serotonin supplement.

We have 500mg powder-filled capsules, I open them and take the whole dose on a spoon (I can't swallow pills). For my daughters (7yrs old/55lbs & 9yrs old/105lbs), I cut the capsules in half with a small knife, trying to keep the powder packed into one half by pressing the side of the knife to it, then drop the powder into a spoon, and let them drink it with water. They don't mind the taste too much. So they are getting approx 250mg. Keep in mind my oldest is close to adult sizes--she's tall. I think it helped her most of all. Keep in mind it is very important to also make sure your kids are at least taking a good multi-vitamin...all this stuff works together to get it converted to serotonin.

My 7yr old was about 47lbs (she dropped from 50lbs in about 3 weeks) when one of our peds put her on 150mg of Omnicef 2x day. We only noticed steady improvements until we tried amoxicillin...after a week we switched back to Omnicef, and she took that dose for about 5 mos. Now she takes 150mg 1x day as a prophylaxis. Look on the side of your Omnicef bottle if it is 250mg/5ml, then your son is getting a total of 500mg daily. If it says 125mg/5ml, then your son is getting 250mg daily. It all depends on your son's weight, but I would think a total of 250mg is about right or a little on the high side (which IMHO for PANDAS is okay)

Yup, and I'm wondering if it might be like some SSRI's where a little bit might be okay (or good) but too much might backfire? Also, it might be a bit problematic (if the child is going off to school) to give it on an empty stomach in the morning. You'd give it, but then have to wait (and hour? or 2-3?) for the tryptophan to absorb b-4 giving breakfast. That might not be terribly practical. Unless you give a scrictly carb breakfast...that might be okay? And send a protein snack for the child to eat mid-morning. We have given it to our daughters off and on now for about a month. In the evening, right before bed, trying to avoid protein. I think it has helped, but not so much that I am making them take it. Some nights they want milk, and then we will skip the tryptophan. That's the beauty of it too, missing a day or two isn't going to have the same effect as missing an SSRI. As someone who has taken it once or twice during the day, and I mostly take it at night. I believe when I took it during the day, it was a little "over the top" for me. I was really happy and giddy, singing, dancing--it was a fun time, but my husband was like, "Who are you?". When I take it at night, I definitely fall asleep better, and I am more even keeled the next day, more tolerant and generally happier. My husband follows a specific program for his panic attacks outlined in a an free online book that I found. It has several pages of cited studies. He takes L-tyrosine in the mornings and afternoons, so that leaves the L-tryptophan to be taken at night. I will send the link to this book to anyone who wants it. Just pm me. I'm not sure if linking to in the public thread is against the forum rules.

It's something to double check...your accountant should know. I think it is probably debatable either way...you don't actually receive a bill from Dr. Cunningham's Lab, and "technically" it is a "suggested" donation. However, if a doctor actually ordered the test, or if it was instrumental in ruling PANDAS in or out, then it may actually be considered a medical expense. Honestly, the debate will only be relevant if you get audited and need to prove it as a medical expense.

You are correct that you can't put it in both categories. I would double check about it being considered a medical expense. If you can say for sure that it has contributed to you child's diagnosis (either way + or -), then you have a good case...if you are just participating for the research, then I think you would need to ask the IRS, an accountant, or even Dr. Cunningham's office may know the answer.

I sent you a pm.

I have heard that since she is a very busy pediatrician, she cannot open her practice up to take any PANDAS patients. Here is her zithromax protocol listed at DrDmk's website. http://drmdk.com/html/pandas_proctocol_treatment.html

If a penicillin allergy is a concern, you can try a cephalosporin. I think the most commonly mentioned cephalosporins on this forum are Keflex and Omnicef. Keflex is a 1st generation cephalosporin, and is realated to penicillins somehow, so there could be a risk of an allergic reaction. Omnicef is a 3rd generation cephalosporin, and I was told it is really is unheard of to have a reaction to it because of a penicillin allergy. My daughter has done well with Omnicef. Make sure you are giving your daughter probiotics too.

I have to admit, that I have only been skimming this thread. However, something is jumping out at me. I have been searching for previous posts from patients of Dr. K who have said that he told them that he has been following his patients for 6 or 10 years (or something like that). Please if anyone finds anything please post the link to that thread. I don't know what is the truth, but it has been reported in the past that he told people that he has followed up with his patients. There have been a few times (maybe the same posts), where he told patients that he was close to publishing a paper. I can't find any of it...does anyone else remember this, or am I crazy?

Antibiotics certainly helped. However, I attribute my daughter's recovery to month-long courses of prednisone. So, I answered none for the first, and several months full recovery for the second questions

Dr L. believes in prophylaxis. If you are not having severe behavior symptoms, that is a good thing...so full-strength antibiotics may not be warranted. I know she treated my daughter's second exacerbation even though there was no evidence she had strep (just her siblings). You don't have to convince Dr. L, just see her again if the tics start up, or call and ask for more antibiotics.

How far out from his strep was his blood drawn. If you draw too soon, there will not be a titer rise yet...I think (going by memory) that the ideal for ASO is 3-6 weeks after and AntiDnase is 6-8 weeks after. Also, there wes a study done with kids who had confirmed strep infections, and blood drawn at ideal times, and had no titer rise...so titers are not that helpful in regards to PANDAS.